I’m a problem solver by nature. A caretaker, helper and nurturer. It’s really not as altruistic as it sounds. I love the rewarding feeling I get when I’ve helped someone. Prior to having my own kids, I spent a lot of time with my niece and nephews. Being a good aunt came very naturally to me. So when I was blessed with my twin girls, Rachel and Grace, almost 11 years ago, I thought I was completely prepared to be great at motherhood.

And to be fair to myself, I was (and still am) pretty good at it, considering that I had two babies to nurture at the same time. I did all the typical things one does with babies and toddlers. Lots of hugs, kisses, tickles, singing songs, reading books, swimming lessons, trips to the petting zoo and the beach. We spent lots of time outside playing in the water, blowing bubbles, at the playground. We tried classes at our local YMCA, dancing, gymnastics, and art. But my kids were always a bit different. We didn’t quite fit in or follow direction very well. Eventually, we stopped joining those types of activities.

By the time the girls turned 3 years old, they were diagnosed with Autism. They will turn 11 this year, and although they have made and continue to make progress, life is difficult for them, especially for Grace whose verbal ability is limited.

Our home is our sanctuary. We dig for worms, and turn over rocks to look for bugs. We put our feet in the mucky pond and try to catch frogs. We pick flowers, climb trees, and eat tomatoes right off the garden. We swing on the hammocks during the day, and lay out on the driveway to look at the stars at night.

My daughters were blessed to have the best resources early on. They have always attended one of the top private schools for Autism and received home training on and off throughout the years. If you’re familiar with Autism, then you know that children on the spectrum learn best when taught using the principles of Applied Behavior Analysis or ABA. In general terms, kids are taught skills in a systematic approach with data being taken along the way, which guides the child’s educational program. To put it simply, it’s pretty cool and it works.

But I hate to admit that it’s a method that feels unnatural to me. When Grace cries, my instinct is to comfort her and ask her what’s wrong. Most times, she can’t tell me what’s wrong. Once she’s frustrated, which happens quickly, and she’s in a full-blown tantrum, there’s not much I can do. I’ve never discouraged showing emotion—on the contrary. But I want so desperately to get into her head, and rewire it so she could talk and communicate. I just want to make everything better for her. But sometimes I feel that my best intentions get in the way of her work.

Yesterday, for example, Grace sat on the floor with her home ABA teacher (and the BCBA supervisor who visits once a week). She had finished dinner, cleaned up after herself, and appropriately chose to work on 2 puzzles. The teacher put the other two puzzles on the side, but Grace wanted them, too. I know why she wanted the other puzzles. Grace has extreme ritualistic behaviors. She wanted to stack the puzzles together. Where a lot of the work is geared toward getting Grace to comply with demands and to decrease those ritualistic behaviors, the teacher did not budge. The goal is for Grace to become more flexible and accept that things don’t always go her way.

“She doesn’t want to do all the puzzles. She just wants to stack them together,” I said, trying to be my child’s voice. But it was already too late. The wooden puzzles and pieces were being flung across the room, and loud AHHHHHs were coming out of her mouth as if she were being physically hurt. My stomach turned as I sat there feeling completely helpless. I wanted to give her the puzzles, not because I was uncomfortable with the tantrum, but because I want my child to be happy and at peace.

I know this is not about me. It’s about Grace. But it’s also about our bond. I’m supposed to be her protector, her advocate and her voice for as long as I can. I want nothing more than to comfort her, and help her. Yet, many times, I am lost. I have no tools even though I have a box full of strategies and resources that I’ve accumulated over the years. I am supposed to ignore “undesirable behaviors” so they won’t be reinforced. But when I see my child in distress, I wish she was 3 again so I could pick her up in my arms, kiss her and tell her “it’s ok Gracie.”

Feeling overwhelmed does not even begin to describe how heavy the air feels sometimes. But I force myself to shake it off. When the anxiety kicks in along with the hopelessness and feelings of failure, it robs me of the opportunity to be in the moment with my daughters. It paralyzes me with self-doubt, which prevents me from being fully present.

We’re not perfect. But our time together is perfect. We are deeply connected in ways that they, nor I, will ever be able to fully comprehend. The phrase “it takes a village,” couldn’t be more appropriate to define what raising two kids with special needs entails. I will try and not interfere with the work our dedicated, compassionate and well-trained teachers do to teach my kids to be independent. And I will keep my anxiety in check because I want to fully breathe in those beautiful smiles as they experience the simple joys of catching frogs, and looking at the stars.